Conflicting info

[cman89]

I am relatively new here, so forgive my ignorance. I am basically doing round two of research overload before I really move forward to tackle this condition that I find myself in. Not really full blown CFS, but certainly struggling with fatigue, decreased endurance, low muscle mass and other symptoms. As I have been reading on the treatments and supposed causes of this syndrome , I see two main categories of affliciting causes. One is viral/bacterial/toxin based with dysfunctional immune system and gut dysbiosis being main culprits. The other is the brain/neural causes, with the ANS dysfunction, cardiac stuff, pain, brain fog, etc... I know there is much overlap, and no cause stands completely alone, but I cant help but have a nagging feeling that one could have all toxins /bacteria cleared up, a perfect diet/gut/immune system, and still have major problems with the neuro end. This is a fear of mine, as I embark on a healing journey, that my efforts will be somewhat in vain, as I may have damage that cannot be reversed. Any input here? (my major symptoms arose from emotional trauma, so I just have a fear of a "stuck" system)

 

[cman89]

I would say that for me, the cardiac stuff is the most concerning, as that is the closest I come to neuro dysfunction. The rest of my symptoms tend to be more faitigue/gut/infection related. I developed the cardio after a major stress event occured after two months of battling a bacterial infection of unknown origin.

 

[Sushi]

Since cardiac symptoms are the most concerning for you, why not go to an existing thread that discusses the particular type of symptoms you have and describe your symptoms and read the discussions from others there? You can find such threads with a Google Site Search.

Best,
Sushi

 

[xchocoholic]

You may gain insight by reading Dr Terry Wahls info, Dr Permutter's "Grain brain" and Dr Davis's "Wheat Belly".

Dr Wahls is recovering from MS so her personal story may help you understand how healing works. I'm not up on her current status tho.

I found another website the other day called "thepatientceliac" that may help too. Celiacs heal or don't heal all the time. I don't know why but integrative or functional docs might. I suspect acquired autoimmune diseases and degree of damage to multiple organs are why.

Fwiw personally, based on my experience, I've found that being on a healing journey (diet, supplements and googling) trumps being a human guinea pig (waiting for a cure) any day.

Tc .. x

 

[alex3619]

This is an area of high uncertainty. It will continue to be an area of uncertainty for a long time. There is no sure path here, you can only do your best.

This is largely reflective of severe underfunding of ME and CFS research for over half a century. We should know a lot more than we do.

We should know much more in the coming years, research progress is better now than at any point in the past. However my own nagging suspicion is that the breakthrough might appear and be largely unnoticed, and then suddenly, years later, there will be an "Aha!" moment. We have no idea where or when the big breakthrough will occur, or if a bunch of breakthroughs are needed, all we can say is that each year is a year closer.

 

[Hip]

As I have been reading on the treatments and supposed causes of this syndrome , I see two main categories of affliciting causes. One is viral/bacterial/toxin based with dysfunctional immune system and gut dysbiosis being main culprits. The other is the brain/neural causes, with the ANS dysfunction, cardiac stuff, pain, brain fog, etc... I know there is much overlap, and no cause stands completely alone, but I cant help but have a nagging feeling that one could have all toxins /bacteria cleared up, a perfect diet/gut/immune system, and still have major problems with the neuro end.

There can be hierarchies of causes: a chronic viral infection might conceivably lead to immune dysfunction and inflammation, including neuroinflammation, which in turn might precipitate the cognitive and mental symptoms of ME/CFS such as brain fog, sound sensitivity, emotional lability, etc, as well as the autonomic dysfunction, cardiac problems.

Assuming, as quite a few researchers believe, that a viral infection is the primary cause of all these downstream effects, then if were possible to eradicate the infection, all these downstream effects should clear up.

However, in reality, there aren't any good antivirals for enterovirus infections, as an example, thus you cannot tackle enterovirus-associated ME/CFS that well using the antiviral route.

So then as the next best thing, you might want to try to ameliorate these various downstream effects. For example, nootropic drugs can be helpful for brain fog, and various drugs can be useful in treating autonomic problems.

Ideally you would want to clear the enteroviral infections from your system, but this is not really possible with the current state of medical technology and pharmacology.

 

[cman89]

There can be hierarchies of causes: a chronic viral infection might conceivably lead to immune dysfunction and inflammation, including neuroinflammation, which in turn might precipitate the cognitive and mental symptoms of ME/CFS such as brain fog, sound sensitivity, emotional lability, etc, as well as the autonomic dysfunction, cardiac problems.

Assuming, as quite a few researchers believe, that a viral infection is the primary cause of all these downstream effects, then if were possible to eradicate the infection, all these downstream effects should clear up.

However, in reality, there aren't any good antivirals for enterovirus infections, as an example, thus you cannot tackle enterovirus-associated ME/CFS that well using the antiviral route.

So then as the next best thing, you might want to try to ameliorate these various downstream effects. For example, nootropic drugs can be helpful for brain fog, and various drugs can be useful in treating autonomic problems.

Ideally you would want to clear the enteroviral infections from your system, but this is not really possible with the current state of medical technology and pharmacology.

Sure, however, if your immune cells are tagged against the virus, and that creates inflammation/autoimmune type effects, then attacking the immune system with drugs would be needed even if virus was gone yes? I mean why does rituximab seem to help? If it clears out b cells but a virus is still present, then would not the cells simply go back to the anti viral attacks? Or the drug is simply dosed constantly to prevent this?

 

[heapsreal]

Sure, however, if your immune cells are tagged against the virus, and that creates inflammation/autoimmune type effects, then attacking the immune system with drugs would be needed even if virus was gone yes? I mean why does rituximab seem to help? If it clears out b cells but a virus is still present, then would not the cells simply go back to the anti viral attacks? Or the drug is simply dosed constantly to prevent this?

Could be a matter of sub sets, we need to wait for the research on rituximab before we know it's a silver bullet for everyone, I think we are going to have subsets of patients in cfsme that respond to different treatments.

 

[Hip]

Sure, however, if your immune cells are tagged against the virus, and that creates inflammation/autoimmune type effects, then attacking the immune system with drugs would be needed even if virus was gone yes? I mean why does rituximab seem to help? If it clears out b cells but a virus is still present, then would not the cells simply go back to the anti viral attacks? Or the drug is simply dosed constantly to prevent this?

Yes, as @heapsreal says, it may be down to there being different subsets of ME/CFS.

If you look the first post in this thread, Prof Jonathan Edwards lists his proposed 6 subtypes for ME/CFS (which he labels ME1, ME2, ME3, etc), based on his experience with ME/CFS patients, and on some theoretical considerations. Don't worry about understanding all the little details of these subtypes; I don't understand all these details either. But just glancing at these 6 subtypes does give an appreciation that there are likely different primary causes for ME/CFS, some with causes (such as subtype ME1) not involving any pathogenic infections at all, but rather being purely driven autoimmune mechanisms.

These different primary causes may all lead to very similar ME/CFS symptoms, but if you want to address and treat these primary causes, you will likely need specific therapies in each case.

Some of these ME/CFS subtypes may benefit from rituximab (presumably the autoimmune subtypes ME1 and ME2). Others such as ME5, which involves viral infection but no autoimmunity, may not benefit from rituximab (but will probably respond to antivirals, and/or immunomodulators like oxymatrine and inosine).

The trouble is that nobody is sure about what ME/CFS subtypes exist, or how to test for them. We don't yet have a test for even the general case of ME/CFS, let alone for the subtypes. So I guess this is what makes the rituximab trial more difficult, because rituximab likely will only like work for certain subtypes.

In the future, if medical science gets a better handle on these subtypes, then it will be easier to direct each patient to the most appropriate treatment for the ME/CFS subtype they have.

 

[cman89]

Yes, as @heapsreal says, it may be down to there being different subsets of ME/CFS.

If you look the first post in this thread, Prof Jonathan Edwards lists his proposed 6 subtypes for ME/CFS (which he labels ME1, ME2, ME3, etc), based on his experience with ME/CFS patients, and on some theoretical considerations. Don't worry about understanding all the little details of these subtypes; I don't understand all these details either. But just glancing at these 6 subtypes does give an appreciation that there are likely different primary causes for ME/CFS, some with causes (such as subtype ME1) not involving any pathogenic infections at all, but rather being purely driven autoimmune mechanisms.

These different primary causes may all lead to very similar ME/CFS symptoms, but if you want to address and treat these primary causes, you will likely need specific therapies in each case.

Some of these ME/CFS subtypes may benefit from rituximab (presumably the autoimmune subtypes ME1 and ME2). Others such as ME5, which involves viral infection but no autoimmunity, may not benefit from rituximab (but will probably respond to antivirals, and/or immunomodulators like oxymatrine and inosine).

The trouble is that nobody is sure about what ME/CFS subtypes exist, or how to test for them. We don't yet have a test for even the general case of ME/CFS, let alone for the subtypes. So I guess this is what makes the rituximab trial more difficult, because rituximab likely will only like work for certain subtypes.

In the future, if medical science gets a better handle on these subtypes, then it will be easier to direct each patient to the most appropriate treatment for the ME/CFS subtype they have.

Agreed, and i have read the edwards post, but I am curious as to see what , aside from general symptoms runs similar in all of these proposed subtypes? I have heard ANS dysfunction as a common thread

 

[heapsreal]

Agreed, and i have read the edwards post, but I am curious as to see what , aside from general symptoms runs similar in all of these proposed subtypes? I have heard ANS dysfunction as a common thread

Generally the subsets used by cfs specialists take into account the different possible infections, immune tests, response to different treatments and some are symptoms.

always been a herpes sub group or combination of, enteroviral group, several different bacterial infections and combinations, candida sub group, pots/oi, tired wired/insomnia, tired but sleepy and sleep most of the day. Another sub group can be more pain or fibro sub group. Adrenal dysfunction group with low cortisol/dhea. Low immunoglobulin group etc auto immune group. Hypothyroid group.

Than u have bed ridden, house bound, low functioning and different levels of being able to work.

There's many others and combinations of all these. Sometimes one can find a treatment but have ongoing issue elsewhere that can mask positive effects of the first.

I would class myself as wired tired in the herpes sub group, sinusitis, adrenal dysfunction with low nk function, neutropenia and chronic lymphocytosis.

nothing black and white but there is a lot of common infections, immune dysfunctions and endocrine dysfunctions etc to group people into.

 

[Hip]

Agreed, and i have read the edwards post, but I am curious as to see what , aside from general symptoms runs similar in all of these proposed subtypes? I have heard ANS dysfunction as a common thread

That's a good question. What you are asking is if ME/CFS has different primary causes, but the disease nevertheless involves dysfunction or abnormality in a number of bodily systems — systems such as the immune system, endocrine system and HPA axis, the autonomic system, cardiovascular system, various areas of the central nervous system — which of these bodily system dysfunctions forms a central part of ME/CFS.

The best way to answer this question is to look at the criteria that are used to diagnose and define ME/CFS. One of the best known diagnostic criteria for ME/CFS are the Canadian Consensus Criteria (CCC), which I quote below:

Canadian Consensus Criteria for Diagnosing and Defining ME/CFS

A patient with ME/CFS will meet the criteria for fatigue, postexertional malaise and/or fatigue, sleep dysfunction, and pain; have two or more neurological/cognitive manifestations and one or more symptoms from two of the categories of autonomic, neuroendocrine, and immune manifestations; and adhere to item 7.

——————————————————————————————————————————————
1. Fatigue: The patient must have a significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.
——————————————————————————————————————————————
2. Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient’s cluster of symptoms to worsen. There is a pathologically slow recovery period usually 24 hours or longer.
——————————————————————————————————————————————
3. Sleep Dysfunction:* There is unrefreshed sleep or sleep quantity or rhythm disturbances such as reversed or chaotic diurnal sleep rhythms.
——————————————————————————————————————————————
4. Pain:* There is a significant degree of myalgia. Pain can be experienced in the muscles, and/or joints, and is often widespread and migratory in nature. Often there are significant headaches of new type, pattern or severity.
——————————————————————————————————————————————
5. Neurological / Cognitive Manifestations: Two or more of the following difficulties should be present: confusion, impairment of concentration and shortterm memory consolidation, disorientation, difficulty with information processing, categorizing and word retrieval, and perceptual and sensory disturbances – e.g. spatial instability and disorientation and inability to focus vision. Ataxia, muscle weakness and fasciculations are common. There may be overload phenomena: cognitive, sensory – e.g. photophobia and hypersensitivity to noise and/or emotional overload, which may lead to "crash" periods and/or anxiety. (Note: "Overload" refers to hypersensitivities to stimuli that have changed from preillness status. "Crash" refers to a temporary period of immobilizing physical and /or cognitive fatigue.)
——————————————————————————————————————————————
6. At Least One Symptom from Two of the Following Categories:

a. Autonomic Manifestations: orthostatic intolerance neurally mediated hypotension (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension; lightheadedness; extreme pallor; nausea and irritable bowel syndrome; urinary frequency and bladder dysfunction; palpitations with or without cardiac arrhythmias; exertional dyspnea.

b. Neuroendocrine Manifestations: loss of thermostatic stability – subnormal body temperature and marked diurnal fluctuation, sweating episodes, recurrent feelings of feverishness and cold extremities; intolerance of extremes of heat and cold; marked weight change anorexia or abnormal appetite; loss of adaptability and worsening of symptoms with stress.

c. Immune Manifestations: tender lymph nodes, recurrent sore throat, recurrent flu like symptoms, general malaise, new sensitivities to food, medications and/or chemicals.
——————————————————————————————————————————————
7. The illness persists for at least six months: It usually has a distinct onset, **although it may be gradual. Preliminary diagnosis may be possible earlier. Three months is appropriate for children.
——————————————————————————————————————————————

To be included, the symptoms must have begun or have been significantly altered after the onset of this illness. It is unlikely that a patient will suffer from all symptoms in criteria 5 & 6. The disturbances tend to form symptom clusters that may fluctuate and change over time. Children often have numerous prominent symptoms but their order of severity tends to vary from day to day.

*There is a small number of patients who have no pain or sleep dysfunction, but no other diagnosis fits except ME/CFS. A diagnosis of ME/CFS can be entertained when this group has an infectious illness type onset.

**Some patients have been unhealthy for other reasons prior to the onset of ME/ CFS and lack detectable triggers at onset or have more gradual or insidious onset.

Exclusions: Exclude active disease processes that explain most of the major symptoms of fatigue, sleep disturbance, pain, and cognitive dysfunction. It is essential to exclude certain diseases, which would be tragic to miss: Addison’s disease, Cushing’s Syndrome, hypothyroidism, hyperthyroidism, iron deficiency, other treatable forms of anemia, iron overload syndrome, diabetes mellitus, and cancer. It is also essential to exclude treatable sleep disorders such as upper airway resistance syndrome and obstructive or central sleep apnea; rheumatological disorders such as rheumatoid arthritis, lupus,polymyositis and polymyalgia rheumatica; immune disorders such as AIDS; neurological disorders such as multiple sclerosis (MS), Parkinsonism, myasthenia gravis and B12 deficiency; infectious diseases such as tuberculosis, chronic hepatitis, Lyme disease, etc.; primary psychiatric disorders and substance abuse. Exclusion of other diagnoses, which cannot be reasonably excluded by the patient’s history and physical examination, is achieved by laboratory testing and imaging. If a potentially confounding medical condition is under control, then the diagnosis of ME/CFS can be entertained if patients meet the criteria otherwise.

Comorbid Entities: Fibromyalgia Syndrome (FMS), Myofascial Pain Syndrome (MPS), Temporomandibular Joint Syndrome (TMJ), Irritable Bowel Syndrome (IBS), Interstitial Cystitis, Irritable Bladder Syndrome, Raynaud’s Phenomenon, Prolapsed Mitral Valve, Depression, Migraine, Allergies, Multiple Chemical Sensitivities (MCS), Hashimoto’s thyroiditis, Sicca Syndrome, etc. Such comorbid entities may occur in the setting of ME/CFS. Others such as IBS may precede the development of ME/CFS by many years, but then become associated with it. The same holds true for migraines and depression. Their association is thus looser than between the symptoms within the syndrome. ME/CFS and FMS often closely connect and should be considered to be “overlap syndromes”.

Idiopathic Chronic Fatigue: If the patient has unexplained prolonged fatigue (6 months or more) but has insufficient symptoms to meet the criteria for ME/CFS, classify it as idiopathic chronic fatigue.

Source: Canadian Consensus Criteria.

So you see that by this CCC diagnostic definition of ME/CFS, you don't necessarily need to have autonomic symptoms if you have ME/CFS (because in section 6 above, you only need to have two of the three categories a, b and c in order to qualify as having ME/CFS).

Note however that in order to qualify as having ME/CFS under the CCC definition, you must have neurological / cognitive symptoms (brain fog, sound sensitivity, etc), and you must have post-exertional malaise / fatigue symptoms (feeling much worse after exertion). So these are the the disease manifestations that runs similarly through all cases of ME/CFS, at least under the CCC definition.

(Note however that there is also the CDC 1994 definition of ME/CFS, which is slightly different to the above CCC definition).

 

[cman89]

Generally the subsets used by cfs specialists take into account the different possible infections, immune tests, response to different treatments and some are symptoms.

always been a herpes sub group or combination of, enteroviral group, several different bacterial infections and combinations, candida sub group, pots/oi, tired wired/insomnia, tired but sleepy and sleep most of the day. Another sub group can be more pain or fibro sub group. Adrenal dysfunction group with low cortisol/dhea. Low immunoglobulin group etc auto immune group. Hypothyroid group.

Than u have bed ridden, house bound, low functioning and different levels of being able to work.

There's many others and combinations of all these. Sometimes one can find a treatment but have ongoing issue elsewhere that can mask positive effects of the first.

I would class myself as wired tired in the herpes sub group, sinusitis, adrenal dysfunction with low nk function, neutropenia and chronic lymphocytosis.

nothing black and white but there is a lot of common infections, immune dysfunctions and endocrine dysfunctions etc to group people into.

I tend to be wired/tired, funky adrenals myself. And brain fog/ pain/pem is a non issue with me. Have you worked on anything targeting adrenals specefically at all?

 

[cman89]

That's a good question. What you are asking is if ME/CFS has different primary causes, but the disease nevertheless involves dysfunction or abnormality in a number of bodily systems — systems such as the immune system, endocrine system and HPA axis, the autonomic system, cardiovascular system, various areas of the central nervous system — which of these bodily system dysfunctions forms a central part of ME/CFS.

The best way to answer this question is to look at the criteria that are used to diagnose and define ME/CFS. One of the best known diagnostic criteria for ME/CFS are the Canadian Consensus Criteria (CCC), which I quote below:




So you see that by this CCC diagnostic definition of ME/CFS, you don't necessarily need to have autonomic symptoms if you have ME/CFS (because in section 6 above, you only need to have two of the three categories a, b and c in order to qualify as having ME/CFS).

Note however that in order to qualify as having ME/CFS under the CCC definition, you must have neurological / cognitive symptoms (brain fog, sound sensitivity, etc), and you must have post-exertional malaise / fatigue symptoms (feeling much worse after exertion). So these are the the disease manifestations that runs similarly through all cases of ME/CFS, at least under the CCC definition.

(Note however that there is also the CDC 1994 definition of ME/CFS, which is slightly different to the above CCC definition).

Yeah, and it funny in a way, because those are the two non issues for me. Very low PEM, no pain (save that related to ortho injuries) and very little brain fog. I do seem to have funky heart rate and blood pressure issues and general faitigue. I know I am not diagnosable CFS at this point, but my mother is, and I personally have found great info here

 

[cman89]

If you dont mind me asking, what is the bare minimum of definition of PEM? How disabled after exercise do you have to be?

 

[cman89]

Generally the subsets used by cfs specialists take into account the different possible infections, immune tests, response to different treatments and some are symptoms.

always been a herpes sub group or combination of, enteroviral group, several different bacterial infections and combinations, candida sub group, pots/oi, tired wired/insomnia, tired but sleepy and sleep most of the day. Another sub group can be more pain or fibro sub group. Adrenal dysfunction group with low cortisol/dhea. Low immunoglobulin group etc auto immune group. Hypothyroid group.

Than u have bed ridden, house bound, low functioning and different levels of being able to work.

There's many others and combinations of all these. Sometimes one can find a treatment but have ongoing issue elsewhere that can mask positive effects of the first.

I would class myself as wired tired in the herpes sub group, sinusitis, adrenal dysfunction with low nk function, neutropenia and chronic lymphocytosis.

nothing black and white but there is a lot of common infections, immune dysfunctions and endocrine dysfunctions etc to group people into.

when you say sinusitis, how severe is it? I have actually been told that i show signs of chronic sinusitis, but I never have had a history of such problems other than yearly sinus infections. lately, seems like they are a bit finicky, but even getting head colds does not aggravate them excessively

 

[Hip]

If you dont mind me asking, what is the bare minimum of definition of PEM? How disabled after exercise do you have to be?

PEM is defined as a worsening of ME/CFS symptoms after physical and/or mental exertion or exercise. In addition, some people get flue-like viral symptoms with their PEM.

But the severity of PEM can vary depending on whether you have mild, moderate or severe ME/CFS. With mild ME/CFS, you may just feel a bit shattered after exertion, but nothing much more. With moderate ME/CFS, your PEM may be so bad that you can hardly function (eg: you brain fog may get so bad that you cannot really read or respond to you emails). With severe ME/CFS, if you are not already bedbound, PEM may be so strong that it will make you bedbound in a very ill and zombie-like state for a few days.

The most characteristic thing about PEM is that it is usually a delayed phenomenon. This means that while you are exerting yourself, you won't feel any ill effects of PEM at the time. But a few hours later, or even the next day, PEM will suddenly hit you, and will typically last for a day or two (sometimes even longer) before it clears.

I myself mostly suffer from mental PEM, rather than physical PEM (which is quite unusual). If I go out socializing for 3 or 4 hours, at the time I feel great, and the mental exertion of all that chatting does not cause any immediate effects. But after I come home, the ill effects start kicking it, and I find for the next two days my brain is well under par. I myself have moderate ME/CFS.

 

[Hip]

And brain fog/ pain/pem is a non issue with me. I do seem to have funky heart rate and blood pressure issues and general faitigue.

If you don't have at least two of the following brain fog conditions (from the CCC section 5), then you don't have ME/CFS, at least by the CCC definition:

Confusion
Impairment of concentration and short-term memory consolidation
Disorientation
Difficulty with information processing, categorizing and word retrieval
Perceptual and sensory disturbances – e.g. spatial instability and disorientation and inability to focus vision

If it turns out you don't have ME/CFS, you might be searching in the wrong area in terms of finding solutions and treatments. However, there are many conditions that cause similar symptoms to ME/CFS: see this list of diseases with similar symptoms to ME/CFS (these are diseases that are often misdiagnosed as ME/CFS).

If you have heart rate issues, note that POTS (postural orthostatic tachycardia syndrome) involves increased heart rate on standing, and interestingly POTS can cause symptoms very similar to ME/CFS. Home diagnosis of POTS is very easy, using the "poor man's tilt table test."

 

[undcvr]

I would say that for me, the cardiac stuff is the most concerning, as that is the closest I come to neuro dysfunction. The rest of my symptoms tend to be more faitigue/gut/infection related. I developed the cardio after a major stress event occured after two months of battling a bacterial infection of unknown origin.

There is known viral related myocarditis with EBV n CMV. Herpes viruses have been found in heart cells.

 

[heapsreal]

when you say sinusitis, how severe is it? I have actually been told that i show signs of chronic sinusitis, but I never have had a history of such problems other than yearly sinus infections. lately, seems like they are a bit finicky, but even getting head colds does not aggravate them excessively

Chronic sinusitis especially the frontal sinuses that run across the forehead, can have very different symptoms to a typical type sinusitis.

Don't always have a runny nose but can have a post nasal drip, where one is clearing their treat all the time. It has a different brain fog and fatigue with it and seems worse after sleeping, maybe due to poor drainage of sinuses when lying down.

for me, sinus symptoms are waking up with extrafatigue and a headache, post nnasal drip which stops if sinusitis worsens ,probably totally blocked up. My blood pressure also shoots up from around 130/80 to 160/110 which gives me a smashing headache. If its bad my whole face aches as i think the infection than infects sinuses further down? I do respond well to abx when this occurs.

Sinusitis seems common in cfs. This could be due to crappy immune system. Sinusitis is common in many immune disorders. I think it's a common Co infection in cfs? ?